Dear Meg,
I write in response to the Public Accounts Committee’s call for evidence for the inquiry considering Digital Transformation in the NHS.
The Office for Statistics Regulation (OSR) is the independent regulatory arm of the UK Statistics Authority. We provide independent regulation of all official statistics produced in the UK, including those in Devolved Nations and the NHS. Our regulatory work is underpinned by the Statistics and Registration Service Act 2007.
We set the standards official statistics must meet through the statutory Code of Practice for Statistics. We ensure that producers of official statistics uphold these standards by conducting assessments against the Code. Those which meet the standards are given National Statistics status, indicating that they meet the highest standards of trustworthiness, quality, and value. We also report publicly on system-wide issues and on the way statistics are being used, celebrating when the standards are upheld and challenging publicly when they are not.
Statistics published by public sector bodies should be produced in a trustworthy way, be of high quality, and provide value by informing answers to society’s important questions. As the regulator of official statistics in the UK, our view is that good quality, granular electronic data is the bedrock for developing statistics that serve the public good. We support and share the ambition of the Department of Health and Social Care (DHSC) to digitally transform the NHS to enable more effective data sharing between health and social care organisations; but recognise the enormity and complexity of the task. Through our own work, we understand the challenges faced by DHSC and in our view there are many foundations which need to be addressed in order to implement this ambition.
This submission outlines some of the challenges faced in the NHS for digital transformation that we can identify with from our own work:
- Data harmonisation
- Data linkage
- Digital skills in workforce
- Fragmentation between health care and social care in England
I look forward to seeing the conclusions of your inquiry. Please do not hesitate to contact me if I can be of any further assistance.
Yours sincerely,
Ed
PUBLIC ACCOUNTS COMMITTEE INQUIRY – DIGITAL TRANSFORMATION IN THE NHS
Joined-up data and data linkage
- From our analysis and the knowledge we have sought about health and social care statistics users’ needs through our regulatory work, we know there is a huge appetite for joined-up statistics that paint a more complete picture of people’s journeys through the different parts of the health and social care system.
- To optimise the benefits that information technology can bring in painting that picture, those responsible for health and social care data should find more efficient and effective ways to legally share data across organisational boundaries, not just for operational or client/patient care reasons, but for research and statistical purposes too. In 2017, we launched a review of the UK statistics system’s ability to provide greater insight to users via data linkage. Our timing was in part prompted by a desire to take stock of the landscape before the new data sharing provisions for statistics and research, introduced by the Digital Economy Act (2017) (DEA), were implemented. Our desired outcome is for data linkage to be widely used to answer society’s important questions in a timely manner.
- Our latest update published in 2019 for the Joining up Data for Better Statistics[1] review found that although data linkage should be a vital part of the official statistics landscape, value is being squandered because for the most part this is not the case. There are some powerful examples of data linkage being used in government to provide insights and drive policy change, but these are the exception and we are concerned that the time and effort required to create linked data resources can discourage others seeking to do similar work.
- In improving its digital infrastructure, the Department of Health and Social Care (DHSC) needs to ensure that NHS systems facilitate quick and efficient data sharing and linkage.
Digital skills of the workforce
- The culture of healthcare and social care settings, that primarily rely on face-to-face techniques to examine and care for people, means that staff will need to be involved in the design and development of new software, and be trained in its implementation.
- The charity doteveryone carried out research to understand the current impact of technology in the social care system and its potential to shape the future. As part of their findings published in the report Better Care in the Age of Automation[2], they recognise that people need skilled helpand flexibility for technology to work for them, and a culture of suspicion and fear inhibits people from taking advantage of new innovations. As well as recommending long-term investment in better data to support a more sustainable and fair system, they also recommend the establishment of a Royal College of Carers. This new organisation would provide the resource and professionalism to supplement existing skills of carers and support the use of any new technologies in the sector.
- In improving the digital infrastructure of the NHS, DHSC needs to ensure users of any new technology are suitably involved and trained in any implementation across the NHS.
Imbalance between health care and social care
- The existing fragmentation between health care and social care in England exacerbates the challenge of digitalisation in the NHS. Adult social care is a large and important area which requires strong evidence to support effective policy development, delivery of care and personal choice. Our recent review of adult social care statistics in England[3] found that this sector is poorly served by data. Scarcity in funding has led to under investment in data and analysis, making it harder for individuals and organisations to make informed decisions. The lack of investment, resourcing and collaboration has led to an imbalance in the quality and value of the statistics when compared with those in the health care sector.
- Our review highlighted three main areas for attention:
- Better leadership and collaboration across the many different organisations involved in the process of publishing official statistics on social care, that enables working across boundaries to join-up government departments, local authorities and between public and private sector providers.
- Gaps in available data as most information available comes from local authorities with responsibilities for adult social services and does not cover private household expenditure, privately funded care or the value of unpaid care causing limited knowledge of individuals care journeys and outcomes.
- Improving existing official statistics through accessibility, coherence, quality, timeliness, and granularity of the data to provide insight and allow existing data to better meet user needs.
- In line with the introduction of new technologies to assist healthcare[4], we want to see progress made with proposed infrastructure that will support the integration of health and social care data so that there is a better understanding of the interaction between health and care and an individual’s experience. We welcome plans set out in the Government’s vision for digital, data and technology in health and care[5]. We hope the establishment of NHSX, a body to ‘progress digital transformation of the NHS’, will allow government to deliver on this ambition while considering data needs. There is also potential for the Office for National Statistics (ONS) to support the sector through innovative approaches to data analysis, such as data linking, and use of provisions in the DEA.
- The autonomy of health and social care data as separate entities not only is apparent in official statistics and public policy, but also in other ways. The digital capability of the social care sector to effectively embed any technological solutions has also been questioned, as highlighted in the NAO report ‘Digital Transformation in the NHS’: ‘practices had more mature arrangements in place for sharing electronic patient records with other healthcare providers in their area than they had with social care providers’. This is also reflected amongst adult social care providers, with the Care Quality Commission reporting challenges faced by adult social care providers in adopting digital technology. Further research by doteveryone Better Evidence for Better Care[6] also suggest that there is not enough evidence available for commissioners and providers to effectively implement new technology into social care services.
- To improve the digitalisation of the NHS, DHSC needs to fully understand the barriers and challenges faced in the social care sector. We will continue to work with a range of organisations to make the case for improvements to social care statistics.
Data harmonisation
- In our view, the most significant long-term solution to improve the coverage and quality of health and social care statistics is the transformation of social care data collection and analysis, bringing them onto a par with hospital data. NHSX was set up in 2019, and encouragingly steps are being taken by some regions of England to pilot a single health and social care record. A single patient record would enable end-to-end analysis of the patient journey and experience of services across the NHS and more widely. It would improve the care for people, particularly for those with multiple long-term conditions in the care of separate specialist teams, and the use of data and technology to achieve this is key.
- Patient-level data that straddles organisational boundaries (such as health/social care or hospital/care home) also needs to have agreed definitions and standards and should harmonise more widely with other data collections e.g. the Census. This is the basis upon which good quality statistics can be developed.
OFFICE FOR STATISTICS REGULATION, SEPTEMBER 2020
[1] Joining Up Data for Better Statistics – 2019 update
[2] doteveryone – Better Care in the Age of Automation, September 2019
[3] Office for Statistics Regulation – Report on Adult Social Care statistics in England, January 2020
[4] Government Technology Innovation Strategy, June 2019
[5] The future of healthcare: our vision for digital, data and technology in health and care, October 2018